Until recently I have not had fatigue so I have not followed that discussion. But now I suddenly have continual yawning together with headaches and sleepiness all day. Could that be anything to do with my ET? Jumbo4
Thanks for posting. Sorry to hear that you have developed these symptoms. May I ask whether you have discussed this with your Haematology team? I say this as the fatigue may be related to your blood counts in particular your Haemoglobin. Being anaemic can lead to sleepiness and headaches so I would suggest checking with the team in terms of you blood counts as this may need addressing.
Happy to talk through further or over the phone: Blood cancer information and support by phone and email | Blood Cancer UK
Thanks Gemma. I only get widely spaced appointments with the specialist and the last one was in July when everything was fine. I have not been given another appointment but expect one around November or December. If my symptoms persist I will see the GP but if you have any firm information on the link with haemoglobin ( such as from an MPN patient zoom,) ,I would be very grateful
My Hb was 110 in July but I was not bad when it once dipped briefly to 104 in 2019
Hi @jumbo4 a very good question which @GemmaBloodCancerUK is far more able to answer than me.
You say you have not got another specialist appointment yet (although you expect one) but in my experience it is OK to ring up in between and tell them your new symptoms, the debilitating nature of them and the effect on your daily life and to ask for a sooner in person or phone appointment.
Please let us know how you are doing, you are such a support to others, we are here to support you.
Be kind to yourself
I may not have been sufficiently determined but I have never managed to get through to my consultant on the phone. It might be more promising to try the haematology nurse. I have not needed to do so in the past.
Oh good idea @jumbo4 the haematology nurse sounds good to me and I suggest my trick of being ‘pleasantly assertive’ to get your needs across.
I can identify with your experiences @jumbo4 , I can never get through to anyone! Just had the letter through for my next consultant appointment and crossed my fingers hoping it wouldn’t be for the week I’m away in December and guess when it was set for? Also after my last appointment my consultant told me to go into a walk in appointment for a chest x-ray and after I did this I got a letter asking me to ring up and make an appointment so I’ve got to phone two different appointment lines to sort out all of the mess… aaarrrrgghhh
Hello again @jumbo4, as you suggested if the symptoms persist I would contact your GP or your Clinical Nurse Specialist. A Haemoglobin of 110 is not acutely low but is lower that normal so this may well be why you feel this way.
Here are some webpages regarding fatigue: Blood cancer symptoms and signs | Blood Cancer UK
Caused by anaemia (a low level of red blood cells)
Red blood cells carry oxygen around the body. If you don’t have enough red blood cells, you can become anaemic. Anaemia can cause tiredness that doesn’t go away with rest or sleep, breathlessness even when you’re resting, and paleness (pallor). Pallor can be seen by pulling down your lower eyelid – the inside will look white or pale pink, rather than dark pink or red.
Other symptoms of anaemia include feeling faint and headaches.
It may be useful to document when you are most fatigued and when the headaches occur. Are you on Hydroxycarbamide tablets? These can cause fatigue as well: https://www.macmillan.org.uk/cancer-information-and-support/treatments-and-drugs/hydroxycarbamide
Keep in touch and take care
I tried the eye test. It is white. But my headaches have almost gone now. I was a bit over wrought. Thanks for the advice.
Thanks Franko. It is strange how we get more annoyed by organisational mixups than by symptoms!
But even the newspapers tell us the NHS is cracking up.
I read historical novels. Apparently it was a lot worse 400 years ago!
Hi @jumbo4 I think you are right it was a lot worse 400 yrs ago.
You have made me thankful for my life today, the medical services we receive, and the progresses made due to our dedicated researchers.
Look after yourself